jemima
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Hi Kristy (sorry got your name wrong before as I have a friend called Kirsty so it must have been on my mind !)
That is so bad that they didn’t do the blood tests. I felt exactly the same way all along that everything takes ages to happen and even if it is a day or a week it does all add up and suddenly you are a month down the line and still nothing has happened. Anyway, in your case I am hoping that all goes well tomorrow and that your partner gets his chemo.
My mum is not starting chemo until August as we booked a holiday (before being diagnosed with cc) to go to France to see all our family out there at the end of July. If things had happened more quickly then she probably would be in the middle of chemo now and we wouldn’t have considered it but what with other appointments happening going to France will only delay it by a couple of weeks. Dr Crosby at Velindre has agreed that the emotional benefit of being with family for a week outweighs the disadvantages of delaying the chemo. I know she will have a great time and it will be a boost to her morale but part of me just wants to get on with it as we have waited so long already.
I think it is Dr Askall that Dr Crosby has said we would see at Singleton. Is he OK ? She needs to make a decision about where to have the chemo quite quickly as we need to get the appointment booked in so that she can start straight away after we get back from holiday. Is he nice, professional, sympathetic ?
I will post about the other opinions we have got as soon as we have any news. Prof Davidson has been very nice so far in all the emails we have exchanged but I have not heard from him yet since he has had Mum’s scan images etc.
Best wishes to you both and good luck for tomorrow
Jemima
Hoping for good news for you tomorrow morning and that your Dad gets sorted out asap.
best wishes
Jemima
Hi Kirsty
I have only just seen your post. Not sure how I missed it. I am just down the road from you in Pembrokeshire. My Mum was diagnosed in Feb 2010 with CC and has a klatskin tumour which is in the left bile duct just inside the liver but it has now spread a little to the right duct. The first place we went to for surgery advice (Basingstoke) said that it was inoperable, but we are getting a second opinion from Prof Brian Davidson at the Royal Free in London, and a third opinion from Prof Jacques Belghiti in Paris (my mum is French but lives here).
If they don’t come up with anything then she is due to start chemotherapy (gem/cis) at the beginning of August.
Who is it that your partner has seen ? Was it in Swansea ? For chemotherapy we have seen Dr Crosby at the Velindre Cancer Centre in Cardiff but Mum may end up having the treatment at Singleton but I can’t remember the name of the doctor…Dr A??? Would this be who you have ?
It doesn’t seem like they are very switched on or sympathetic so it may sway our decision to stay in Cardiff even though it is further away.
In everything that I have learnt so far the best thing to do is get as much information as possible and then if you are not happy with the care that you are getting then try somewhere else.
Sending my best wishes to you and your partner
JemimaHi Pam
Sorry to hear that your Dad is feeling so bad. I haven’t really got anything new to add as the others have said all that I would have done. Just to reiterate about writing down questions, but also write down the answers ! It is so easy to forget what the doctors have said even though it seems clear at the time.
I hope that they manage to give your Dad some relief today, or at least put some sort of timetable in place for doing it. If his bilirubin is rising then surely it is his stent that is not working and they should be replacing it or at least looking into what is happening.
I have learnt the hard way with my Mum that if in doubt go to the ER. The first time it happened we didn’t think it was worth it but she ended up in hospital for 5 days and felt really ill for nearly 2 weeks, whereas if we’d gone immediately she felt unwell she would have been in and out in a couple of days.
best wishes
JemimaHi Andie
That is so bad. Even though he is feeling well now making him wait possibly up to a month is crazy. As you say it will take him longer to get better the longer they leave it which will mean he will probably be in hospital longer….thereby taking up a bed space himself, whereas if they did it now he could be in and out in a day.
Can you contact his consultant and see whether they can bump him up the list, or try and get a cancellation ?
I would try and contact all relevant people and see what they can do. Otherwise his chemo will be put back again. Grrrr, it makes me angry when people can’t see the bigger picture….Change his stent now, bilirubin drops, chemo starts, everyone is happy….. why doesn’t the NHS work like this !I hope that you can get it sorted for him. Yes, A&E would be one option as then they would have to get him a bed, but you might have to get him to ‘fake’ some symptoms….
Good luck
Jemima
Hi Rick
Sorry to hear your latest news. I hope you managed to have a good time at the party anyway, and that Mayo can give you some answers.
It’s good that you are less tired/nauseated though.
Best wishes from me
JemimaThank you all for your messages.
Mum says that she drinks lots but I know that to her that means about 2 or 3 glasses a day….. I think I will have to do the bottle thing like you do Marion.
The guy in France is part of Prof. Jacques Belghiti’s team. They seem to have done a lot of research on CC so I am hoping that with their opinion and Prof. Davidson’s we may come up with something new, or maybe not and then at least we will know that chemo is definitely the next step.
Mum is feeling better this morning though which is great. Her temperature is normal and she is feeling better in herself. I think I’ll get her checked out at the hospital tomorrow though. It may not be a stent infection of course, it may have been something different but it is so difficult to know what to do. It would be nice to have some sort of guide. Is there a ‘CC for Dummies’ book ??!!Andie, mum’s stent is plastic but she’s only had her latest one a few weeks so I am hoping it is not blocked already.
Was it the Cyberknife Centre in Harley Street you got in touch with ? I had a couple of emails back from thema nd they said nothing about having chemo first. Said to send a referral letter from her consultant and all scans etc. I know there are two in London so maybe yours was the other one ?Interesting about the Omega 3. I’ll have to look into that if/when Mum starts chemo.
Hope your Dad’s bilirubin falls enough for him to start chemo soon. Keep in touch too as it seems like we have similar cases…
best wishes and thanks again
Jemima
Hello
Just thought I would update my Mum’s situation. Well, she had her stent changed on 1st June and after a couple of days at home she was doing really well and was almost back to her usual self. So, for the past three weeks she has been feeling OK and just a bit tired.
Then last Thursday she felt unwell, not at all hungry and had a temperature 39+. So I called our local doctor who came out to see her and has prescribed an antiobiotic – cefalexin. I don’t think it’s massively suitable but it seems to be working to keep things at bay. Her temp is lower but she is not feeling great. Anyway, we are seeing how things are going at home as she really doesn’t want to go into hospital. I will take her on Monday anyway as her consultant will be in then and we will see what he says.
It’s all a bit of a blow as it has been such a short time since the new stent.
On the 9th July we are planning to go to Paris to see a surgeon who specialises in CC so we will see what happens there.
If she is feeling well enough then we will go back to France a couple of weeks later to see all her family and then start chemo as soon as she gets back.
In the meantime we are waiting to hear back from Prof Davidson in London to see his thoughts about surgery, and we are sorting out a referral for Cyberknife.
So although there is lots going on we are still just waiting …….
I hate CC
JemimaHi Andie
Sorry to hear this about your Dad. It must be so disheartening to feel that things are not progressing and that there is no obvious reason. I am keeping my fingers crossed for you both that his level drops quickly and that he can start on the chemo soon.
Jemima
Hi Kate
I would rather she start as soon as possible as well, especially as it has taken so long to get to this point. However, as she has not had chemotherapy before we have no idea what side effects she will have and how tired she will feel. If she started next week then she would essentially do one cycle and then have to stop for a week or two. I presume that chemo does better if you carry on rather than stop or start but maybe I am wrong.
We’ll see what the oncologist says when he comes back from holiday next week !Thanks
Jemima
Thank you Lainy for your message. Yes, it has to be Mum’s decision, as in your case it has been Teddy’s to make. She is just at the beginning of what you have been through these past 5 years. I hope that you have an amazing summer seeing all your friends and family and enjoying the time together.
If we do go to France then the week that we spend will be so special, whether the chemo works or not it will provide her with emotional support which is invaluable.
All my thoughts and best wishes go to you and TeddyHi Andie
I know what you mean about not knowing that he is ill. Mum is the same in that she looks well, feels well, no pain or anything, but just gets tired a bit more easily than before. She was/is such an active person despite being 77. She has more of a social life than I do !
It is great that they feel this way but it makes it seem all the more unreal that they have something which is inoperable and devastating. Have the doctors said anything about using the chemo to shrink the tumour to make surgery a possibility ? I did mention it to our oncologist but I guess they don’t want to make any promises and it does not always happen.
I guess we just have to keep hoping and praying for the best outcome. In the meantime having a week or so surrounded by family back in her home country will be such a positive event.
We are getting a second opinion from Prof Davidson at the Royal Free in London regarding surgery, and are also looking into Cyberknife although no-one seems very positive about it, because it is quite new in the UK I suppose, and only available privately.
I hope your Dad’s chemo goes well and that he doesn’t get too many side effects. I will be very interested in how it goes for him, although I know that everyone is different.
Please keep us posted.
Best wishes and hugs to you and your Dad
Jemima
Dear Lainy
I am so sorry to hear this about Teddy. Your story has given me such inspiration. Maybe there will be another twist in the tale as it seems that he has not taken the straight path on the CC journey…..
My thoughts are with you.
JemimaHi Andie
I am sorry you are having such a negative experience with the so called experts but maybe it is a UK thing…. My mum and I are going through the same thing. Wherever we go they are always saying how unresponsive CC is to chemo and radiation and that basically there are no other options.
It gets me mad too !
I started talking to the Oncologist today about cyberknife and second opinions and he was actually a bit more positive than some of the others we have seen.
As people on here have said before, there is no date stamp on us, so saying that your father has 11 months is not the end of it. If your oncologist is not fighting for your Dad then maybe you can try and find one who will be more open to trying different chemo etc.
Stay strong and look after yourself.
Jemima
